Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.

Often when a premature child or sick baby is rushed to Sickkids NICU, speed is of the essence and mom and dad will have to catch up with their baby a little later. It is not uncommon for dads to chase the ambulance and be the first into NICU and then leave to help mom. Even once reunited, space constraints do not allow moms to routinely sleep beside their babies.

Recognizing that this separation is stressful for parents, Sickkids NICU often take pictures of babies to give or email to parents.

With the donation of a digital camera and printer, NICU social workers want to take pictures of every baby to give to the parents.

The Sasha Bella Fund is very happy to help with an initial $1000.00 for the photo print stock. Photographer Bev Rodin, who contributed a photography session to the silent auction at the June walk, volunteered to help staff get setup to take the best pictures possible. Thanks Bev!

This is a good example of the low cost, high impact support for Sickkids families made possible by donations to a Foundation family fund with guidance from engaged Sickkids staff.

Sickkids Foundation Hero's Dinner was a moving celebration of Sickkids top donors and the patients, families and hospital teams that constitute the circle of care. In line with a hospital focus on interprofessional practice, videos focused on the linkages between families, staff and donors and emphasized a wide circle of excellence at a top paediatric hospital.

The evening was opened by Sickkids and Sickkids Foundation Board member Patsy Anderson who introduced a video on family centred interprofessional care in the NICU that featured several staff working on the new NICU Family Care Group. Each of the short videos during the evening linked the children, hospital staff and family donors. Children featured included Connor and Nathan Whalen, Iona Gillespie and Dan Aziz.

Foundation President Michael 0'Mahoney held an imprompto interview with Gary Sleight, the donor behind the radiothons that have raised over 25 million dollars, and thanked the Sleight family for a recent donation to continuing education.

Janice O'Born then asked everyone to take the medical bracelet off the wine glass and slip it over their thumb and imagine the impossibly small ankle of a premature child in NICU. The O'Born family orginated the O'Born challenge that matches donations over $10,000. Michael joked that it was one time he hoped for an expensive evening for Earle O'Born.

Bob Aziz celebrated the surgical repair to their son Dan of a hangman's break in his spine, an almost miraculous recovery and there was an accompanying movie of Dan rowing several years after the accident.

To symbolize the circle of care, Michael O'Mahoney then called up many of the families and staff and donors featured during the night: neuro surgeon Dr Peter Dirks, the Gillespie family, the Whalen family, Dr Chris Tomlinson, NICU occupational therapist Sandy Steinwender, Patsy Anderson, NICU nurse practitioner Hazel Pleasants, head of general surgery Dr Jacob Langer, Chair of Sickkids Board of Trustees Constance Sugiyama, Janice and Earle O'Born and NICU social worker Dianne Fierheller.

To our amazement we were seated beside Cindy and Jeff whose daughter had been with ours on CCCU and 4D from late 2005 and early 2006 and with whom we reconnected for the first time in two years. We also chatted with NICU neonatologist Dr Patrick McNamara who has cared for Lisa and Norm's daughter Julia.

After the dinner, I connected with Sickkids parents Mitch Blum, Owen Duckman and Janis Purdy. This was the perfect evening to connect with Foundation staff like Malcolm Berry, Lisa Charendoff (who organized Dan's performance in NICU), Daniel Unruh and Eliza O'Neil. I also had the longest conversation with Sasha's cath specialist Dr Lee Benson since he updated us after Sasha's last cath. At the end of the night we spied designer Brian Gluckstein who donated his time to redesign the Rehab Centre for the children needing occupation, physical or burns therapists. Though we were among the last standing, he seemed so pleased to go on a little mental walk about with us, chatting about our favorite rooms in the newly decorated space and what a difference small things like paint, lights, wood flooring and all the new cabinet doors has made in the 50 year old space.

It was a moving and dramatically choreographed event that had my eyes tear a number of times with joy for the families and staff. The departmental focus this year was on the NICU and general surgery. One addition I would love to see in future years is the celebration of a palliative or deceased hero and their family and their medical teams to expand the circle of care to those special kids who remain with us in spirit.

A big thanks to Norm Leung and Lisa Bonney for inviting Pamela and I to join them at the dinner. Here we are with Brian Gluckstein.

Interprofessional Practise is about how several teams with very different specialists work together well to care for and support sick kids and their families. In this era of complex medicine, ethical decisions and budget cuts, IPP excites us on this blog because it impacts "everything" relating to how our kids are cared for: health stats, errors, efficiency and satisfaction scores. Successful IPP is also in my humble opinion a prerequisite for successful family centred care aiming ultimately to foster true partnership between medical staff and patients and families. (See Ontario Hospital Association May 5, 2008 symposium poster)

The second Sickkids IPP symposium on Tuesday November 18 anchors a week long series of Interprofessional practise events profiling IPP staff education strategies and examples of collaboration in action. This includes updates on IPP student placements, best practises, teamwork and patient safety and innovations in IPP education. The roster is being finalized but the symposium itself begins with Margaret Keatings, Chief of Interprofessional Practise and Chief Nurse Executive, Sickkids, and Dr. Joshua Tepper, Assistant Deputy Director, Ministry of Health and Long-Term Care. The keynote is from scientist, research lead and U of T academic Scott Reeves. Sickkids social worker David Nicholas speaks to the needs of professionals based on analysis of the raw video interviews on IPP and family centred care. A McMaster Team OSCE (or Objective Structured Clinical Examination pronounced OSKEE)models a challenging palliative scenario over multiple stations likely also pulling staff in. Learning Institute researcher Lorelei Lingard discusses the 8C Partnered Learning Project that brought Ryerson and U of T students in for hospital placements. And last but certainly not least, Sherry Espin focuses on the all important topic of Patient Safety. Sometime during the day there will likely be showing of all or part of the new IPP training video. And a final surprise, hopefully after a dynamic dramatic OSCE, Sickkids first palliative care award for interprofessional excellence will be presented. This recognition of the challenge of consistent, transparent and affirming support of the dying is supported and was requested by several families including The Sasha Bella Fund.

Noteworthy is the balance of Sickkids staff perspectives with two outside perspectives whose research appears to dovetail. Scott Reeves appears to be an inspired IPP triple threat (Director of Research, Centre for Faculty Development at St Michael’s Hospital; Scientist, Li Ka Shing Knowledge Institute of St Michael's Hospital; and Associate Professor, Department of Psychiatry) as his resume starts with IPP research in 1994 and never stops. Sherry Espin is similarly affiliated and her bio has her thesis and first publications focus on the "diversity of inter-professional team members’ perspectives on the topic of error, error disclosure and reporting as well as patients’ perceptions of these issues" and her current research focus "seeks to theorize how professionals on the health care team interact with one another in the context of perceived errors of care, in settings such as the intensive care unit, the operating room and the medical inpatient ward."

Missing so far is a Sickkids parent or patient speaker. Last year's IPP event offered this fund an opportunity to talk about Sasha's experience and I could see from the faces that many were engaged and touched while others were wide eyed at the laundry list (I did also celebrate successes); it's common to hear from staff the first time we meet 'I heard you at the IPP symposium'. I hope the tradition of hearing a patient or family story about interprofessional practise can continue.

The provision of comprehensive health services to patients by multiple health caregivers who work collaboratively to deliver quality of care within and across settings. Ministry of Health & Long-terms Care, Province of Ontario, 2007

IPP in a paediatric setting refers to the continuous interaction of two or more professions, organized into a common effort to solve or explore common issueswith the best possible participation of the child and family. Designed to promote active participation of each profession in patient-care planning and delivery while remaining focused on child and family-centred goals and values. Ministry of Health & Long-term Care, Province of Ontario, 2007

Occasions when two or more professions learn with, from and about each other to improve collaboration and the quality of care. Centre for the Advancement of Interprofessional Education, 1997

The scale of the IPP challenge is illustrated with great synchronicity by a concise review of research on mom and staff communication in three NICUs in mid-Atlantic United States.

"Parent-doctor discussions about whether to maintain or withdraw life support from terminally ill or severely premature newborns are so plagued by miscommunication and misunderstanding that they might as well be in different languages" begins the review of the study which interviewed 26 mothers of babies at three mid-Atlantic NICUs.

The study found "what mothers said they were told by doctors was often at odds with what physicians recorded in the medical chart with respect to options offered and accepted" and "few mothers recalled discussing the full range of options, from aggressive resuscitation to palliative care through the end of life".

"We found that the parents of gravely ill newborns, who are understandably overwhelmed are quite confused by the often technical and vague 'doctor speak'," says lead researcher Renee Boss, M.D., a neonatologist at Hopkins Children's. "We, as physicians and caregivers, really need to come up with a clearer way of talking with parents during this incredibly hard time."

The study found 'most' moms prefer to make decisions together with their doctors, not alone, and mistrusted physicians who seemed detached or 'by the book' and felt deeper trust of "physicians who expressed emotion, regardless of the prognosis they had for the infant". Obstetrics and neonatology training should help staff be "attentive to emotion and expressing empathy when delivering bad news". The study calls for organizations like the American Academy of Pediatrics to formulate new guidelines helping physicians to discuss "life-sustaining options" with parents.

Parents of children with severe medical conditions face many fears about their children's quality of life and long term prospects and open communication with a skilled and empathetic medical team is an anchor support. Parents of children with severe cognitive deficits may face another fear, however, that hospital care priorities or individual staff prejudices (however benevalently framed) will impact their child without being transparent in the care discussion.

Annie Farlow arrived in this world to a loving family, aware of and prepared for the cognitive and developmental impacts of her condition. Barbara and Tim Farlow's journey to understand the circumstances of Annie's death in an unnamed Toronto pediatric ICU challenge us to look at one of the most disturbing fears of parents of seriously challenged children:

"Do some doctors play God with disabled kids? Are treatable but possibly fatal problems, such as digestive obstructions or respiratory difficulties, sometimes left to take their course when a child has a condition like cerebral palsy or Down syndrome or, in Annie's case, Trisomy 13? Do some medical professionals mask their own quality-of-life opinions by giving parents only the worst-case scenario, leading to what Farlow calls "misinformed consent"? What can families do to change things?... As a member of the Canadian Patient Safety Institute and Patients for Patient Safety Canada, part of the World Health Organization's Alliance for Patient Safety, Farlow says she wants to bring more accountability and respect for life to the system. This is not about advocating prolonging life at any cost, she emphasizes. It's about patient-centred care in which the family is included in an informed decision-making process. Some families may feel comfortable knowing they will be giving birth to a child with disabilities; others may not, she says. Either way, their wishes should be respected through a process that is transparent and accountable."

You can read the full article by Helen Henderson and view the family website that remembers Annie and reminds us all that the ultimate test of patient and family centred care is its application to the most vulnerable of our developmentally challenged children.

I was intrigued by this group, described as "a community of parents, caregivers, grandparents and the public at large who want to help The Hospital for Sick Children (SickKids) develop better products and services that are truly useful and effective.", so I subscribed to the newsletter and here is the first update after the summer hiatus [links are mine].

Hi Everyone,

I have some exciting updates to pass along to you.

Firstly, the second edition of The Hospital for Sick Children's Better Baby Food book authored by Daina Kalnins and Joanne Saab has hit the shelves at Chapters and a few other local stores (as well as online). Very exciting!! Thanks so much to all of you who tested the recipes and gave valuable feedback.

Secondly, SickKids Family Knowledge Group has secured a booth at the Today's Parent Baby & Toddler Show, November 7-9, 2008, Metro Toronto Convention Centre. If you happen to be going please drop by and say hi, or if you know of someone that will be attending, let them know to keep their eye out for us. We will be there to recruit more parents and caregivers for the SickKids Family Knowledge Group as we are anticipating more projects for 2009!

The Sasha Bella Forever blog began in 2006 as a tribute to our first daughter and her caregivers as we brought her home from the hospital to die. Expecting just a few days together, we had five incredible weeks. These posts celebrate the life of children with complex care needs and their families and staff partners in care. The posts also share the work of The Sasha Bella Fund For Family Centered Care at SickKids Foundation across the spectrum of care, education and research. From Sasha's experience, the fund and blog focuses on partnership, inter-professional and inter-disciplinary teamwork, palliative and end of life care, patient safety, care for the care-givers, patient and family advisory, peer support and the special challenge of the ICU. Please share, or Like or comment if you are moved by a particular post or think of The Sasha Bella Fund during your charitable giving.Regards,Jonathan Blumberg (Sasha's dad)

The Fund supports family-centered interprofessional care, family advisory, patient safety and palliative care with low cost initiatives like awards, small grants to programs and research, website initiatives, murals, sharing our story and volunteering at the hospital. See a list of fund projects and please consider donating securely online at Sasha's SickKids Foundation page (a tax receipt is emailed immediately) or by calling Laurel at SickKids Foundation.

All donations to a directed family fund like the Sasha Bella Fund For Family-Centred Caregoes to projects at SickKids Hospital with no Foundation overhead.

What is family-centered care? Frank Gavin offered a great definition in the 2005 Family Advisory Council report:

"Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.”

Thanks to all the almost 1000 families who have helped SickKids through The Sasha Bella Fund since 2006 and who in October 2009 helped raise $20,000 for Sickkids Hospital and Bloorview Kids Rehab. Special thanks to the performers who donated their special skills, Sho Mo + The Monkey Bunch, Charlie and Little Fingers, Deb Maes, Bloorview therapeutic clowns and Master Choung Taekwondo club, and The Stockyards, Ravisoups and Mildred Pierce for an incredible lunch. Checkout pictures of the 2009 Fun Day by Peter Fenyevesi and Bryan McBurney.

"After much research and exploration and talking with people at the Sick Kids Foundation we have found the Fund that I think addresses the same goals and priorities that Diane and I have for helping to affect change at SickKids. It's called the Sasha Bella Fund and it's named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006. They do great work, particularly in encouraging family-centred care in the intensive units of Sick Kids ... encouraging family centred practice on the general units, advancing palliative care and support for parents and promoting interprofessional education. It's a fund and a cause we are proud to support and we encourage everyone to take a closer look." Janis Purdy and Diane Flacks

Sasha was born with Alagille Syndrome and pulmonary atresia, serious liver and cardiac defects leaving her ineligible for transplants. Cardiac surgery was risky but without more oxygen to her lungs Sasha would die. Our core SickKids team was the 4D nurses, cardiologist Dr Jennifer Russell, surgeon Dr Glen Van Arsdell, catheterization specialists Dr Lee Benson and Dr Jin-Lee and gastrointerologist Dr Simon Ling. The plan included catheterizations to widen tiny arteries, surgery to install a central shunt at 3 months, more caths and more surgery to partly rebuild her collateral arteries into a pulmonary artery. A blue baby came home after birth and grew into a golden haired 18 month cherub with only short hospital stays. She appeared to thrive; yet as we rebuilt Sasha's heart, her liver weakened. A second surgery resulted in hemorrhage, fever, liver failure, portal hypertension, GI bleeds, and a jejunal fistula to her belly. We accepted Sasha was dying when she required daily blood transfusions. She came home supported by the Temmy Latner Centre, TCCAC nurses and SickKids - we expected 3 days with our peach but she stopped bleeding and lived five precious weeks.